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I'm not a gambler. I've never even bought a lottery ticket. Four years ago, though, I believed the odds were in my favor and I chose not to undergo radiation following a lumpectomy for infiltrating ductal carcinoma. I wrote in my initial "story" joining this forum that something about the two surgeries at that time seemed to tip the balance from my being an active, productive, working woman with occasional shortness of breath to a bloated old woman leashed to an oxygen condenser. The… read more
@A MyCOPDTeam Member, I am really concerned for you. I've read comments by others about liquid oxygen but have never seen or used it. I have a large oxygen condenser machine with a very long tube to use in my relatively normal life when I'm at home (3 lpm), and though I rarely go out, when I do, I have portable cannisters of compressed oxygen that also last close to six hours. The main difference for me is that the home machine is a constant flow and the portable tanks are "pulse," meaning I have to think more about breathing to get what I need and, despite efforts to exercise, there are days when I can barely lift the thing -- and better days when I can carry both the tank and a spare to the car -- oxygenation to muscles makes a big difference. Obviously, at your age you must be on Medicare, but there must be something different in our supplemental plans. I have something called Humana Advantage, which is basically a replacement for Medicare, and so far the aftermath of Obamacare has been much higher deductibles and cost of inhalers so high that I'm ordering them from India, but no one has threatened my oxygen supply. If they did, I wouldn't live through the day. How could they do this to you? How do you breathe?
This weight thing is also confusing to me. I've read that it's normal to lose weight as you have, but when I used Dulera and its inhaled corticosteroids, I gained nearly 20 pounds, most of it in my belly.and my face. Turns out that, at least for me, the steroids skewed my thyroid, too, and gradually I'm beginning to look like a normal person again, but I'm still uncomfortable. Apparently the hyperventilation of my lungs has led to the proverbial "barrel chest" and I went from a 36 to a 42, but still barely a B cup (and after two lumpectomies, more like an A minus).
Given the cancer diagnosis, mentioning concerns about weight may seem frivolous, but it all plays into the decision about radiation. I'll be seeing the pulmonary people on Friday, but in the meantime, please let me know more details about your situation because that just doesn't seem right that you should be so vulnerable. I'm just thinking maybe there's something available to you that no one has told you about.
@A MyCOPDTeam Member, I'm encouraged to know about this. I'm also still aware that there is data available that for women my age (73 in two weeks), radiation following lumpectomy doesn't make much difference in terms of longevity. I am less concerned about longevity than I am about a lot of other things, most especially how my condition affects my family. If it turns out that I can't handle a pill, as happened four years ago, I can stop taking the pill, but there's no way I can get "unburned." BTW, did I tell you I'm a little bit Texan? I'm an Army brat and graduated from high school in Killeen (Ft. Hood) and went to TCU for my first year in college.
@A MyCOPDTeam Member I should have perhaps added that the balloon is at the end of the tube and everything stays in place the entire 5 days. Just during the twice daily radiation is the balloon inflated with something during the radiation, and then it is emptied at the end of the few minutes until the next round a few hours later. There is no anesthetic, no pain and you don't know feel anything during the treatment or when the balloon fills or empties. It is all controlled by doctors in an adjoining room about 10 ft away watching you through the glass window and monitoring their radiation equipment.
Thank you, @A MyCOPDTeam Member. You're right about the different terminology. I had a mastectomy in 1996, a lumpectomy in 2012, and this recent one was termed "partial mastectomy" but was really a lumpectomy for a very small tumor. Four years ago, something similar with radiation was attempted on me, but it required the installation of a kind of capsule within the cavity of the breast and I was just too small. That balloon makes a lot more sense than what they tried to do to me -- very painful! I also had no lymph node involvement and a second surgery to insure clear margins. (So much for that theory.) This new tumor is triple positive, which is the reason it's likely they will try to push the idea of estrogen receptor blockers. I'll research this MammoSite and everything else I can find before my appointments in the middle of June. I'm so glad you had good results!
I am considered petite and have had COPD for a number of years. In 08 I had breast cancer on which they did a modified mastectomy, or lumpectomy - different docs used different terms. However, since I am so small and my lungs were so damaged, although I needed radiation they definitely didn't want to do it as it would probably do some additional damage to my lungs. My margins were clear and the lymph nodes they removed showed no involvement. They approached me about a newer (at that time) treatment available, called MammoSite radiation. It is an intense 2Xdaily for 5 days radiation. This does not damage the lungs. They explained to me that if my breast cancer returned, it was most likely to recur at the site where the previous one was removed. The MammoSite is a tube that goes from the outside of the breast to the cavity that was left by the removal, and a balloon inflates to fill the cavity and the attending crew gives you the proper dose for a VERY SPECIFIC controlled time. The tube and attachments remain in place and you do this twice daily for 5 days. I had mine done in San Antonio so we just pulled our airstream there and checked into an RV park and enjoyed our 5 days in the city. There is no nausea or skin burning, so no lung damage. Not everyone is a candidate for this as a lot of it depends on the location on the breast, whether you were triple negative, and the margins, etc. Google it - you might want to ask your doctor about it. I have a friend who had the same procedure, at about the same time, in Denton, TX. She is very happy with her results also.
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